Hi,
Just want to ask for information on how to cope with a lung cancer diagnosis. The nodules where discovered in 2018 after going for a CT scan for chest. I have had MRI scan and PET CT scan. I am waiting for the results of lung cancer CT scan staging. I have three nodules, 2 in the left and one in the right side. One is 3.2cm, the other 12mm and other is 8mm. They are all in the lower lobes. I am really worried and not sure how I will cope with this. Any information is greatly appreciated.
Hello.welcome to the forum.all the best,hope you soon get a diagnosis x
That must be a shock for you Pipido and I do feel for you. Please let us know how things go with the scan results. Sorry I can’t be of help to you. Xxx
It's always so hard when you're between the initial diagnosis and the decisions for treatment. Hopefully the medical team will support you through this. Do you have a person you can contact to ask questions?
Yes it's really hard. I was told to speak to the Lung health nurse but they seem to be always busy so she just said to wait until I get the results.
Hi Pipido36, I have just been told I have 5 nodules on my lungs following a ct scan in April. I was prescribed a 3 week course of antibiotics and will have another scan in July to see if there has been any change to them. They think the 3 on the left may be caused by inflammation and/or infection. The 2 on the right are sited deep within tissue and will be treated with radiotherapy if they show signs of change after the next scan. It’s a very worrying and frightening time. I’ve had many sleepless nights and don’t know how I will cope with a cancer diagnosis either. I was told by the nurses to remain positive but that is so difficult! Sending you my very best wishes,xxx
Hi, FirconeThank you for the reply. Same here, I'm worried and try to stay positive but I can't. Hope you also get the support and help you need. At first they thought it was infection same as you, but after treatment there was no change. So after tests they said its cancer. So just waiting for results to know what stage it's on. Take care and know you are not alone. Will keep updating. Xxx
Hello please contact Roy Castle Lung Cancer Foundation for help and support. They have a page on Health unlocked and you can contact them direct as well. They are the experts and were really helpful when my husband was diagnosed. Good luck and I hope things go well for you.
Thank you very much for the info. Will definitely contact them. Thank you again.
No problem. We also found Macmillan booklets really helpful when needing to understand treatment and side effects. Our Lung nurse at the hospital was really good but as you say can be hard to get hold of. I dont know where you live but you may well find there is also advice available on a whole range of things via the voluntary sector in hospital for instance the Richard Dimbelby Centre at Guys hospital in London.
Hi Pipido36
I can only comment on my own experience, I was diagnosed in April 2019, had all the same tests as you have mentioned in your post, then had a bronchoscopy, the results confirmed it was non small cell lung cancer. The nurse told me to be positive as it was more responsive to treatment than small cell cancer. Underwent 2 types of chemo and immunotherapy, every 3 weeks for 5 weeks, they then stopped 1 of the chemo treatments and I carried on with remainder for over a year, every 3 weeks, had to stop eventually as immuno was starting affect my kidneys, ( they have now returned to normal).
Since then I have had a CT every 3 months followed by oncology appointment, I still have 2 in my lungs 1 is 12mm other is 13mm, they are now dormant and have been for over 2 years.
It has got to the stage that I only think about the cancer just before the CT scan and appointment the week after to get results.
3 months ago my new oncologist asked my old hospital to recheck my lung sample for a faulty gene, which they confirmed I have, this means if it ever does comes back there are new treatments available.
So try and stay positive, there are lots of ways to stop it without always resorting to surgery, which I could not have as I also have COPD.
Best wishes
Jools
Hi Pipido - not all modules are cancerous . I have some - am told they are benign. My niece had a big mass on her lung. She had a whole lobe (1/3 of one lung) removed - tests showed it was not cancerous.So keeping everything crossed that your results are good too.
X
Thank you. I hope so. X
Hi,you could ring the British Lung Foundation and ask to speak to a nurse. When I rang they said a nurse would ring me back within 3 days.
I have a chronic lung condition,which can’t be cured,it can just be managed.
I had some issues,she answered my questions and we had a useful conversation. I have access to a nurse helpline ,but I find they’ve been really busy this year and take a while to get back.
I find that it helps to write my questions down when I’m waiting for the phone call.it’s hard trying to take in all the information you have been given,especially at such a difficult time for you.
I hope things go as well as possible..take care.
If you don’t ask anything any one says,ask them to explain.xx
I don't have any advice but want to wish you all the very best with further treatment.
It is hard to stay positive when you receive a single diagnosis and it`s fine for others to tell you to stay positive.
BUT, You have to be as positive as you can. no doors have been closed yet and there are plenty of good doors in the future.
I wish you a very positive prayer and the friendship of the people on this site.
We are all with you.
Hi Pipido. Welcome to the forum, you will find great support from the members here. I'm sorry to hear you are waiting for a cancer diagnosis to be confirmed before a decision on treatment. I hope your results are in your favour and that you get the best possible advice and support from the medical team. Wishing you all the very best xxx
Have you been diagnosed with lung cancer or are they still investigating the nodules? I have a few nodules as well and have had a few CT scans over the last three years to monitor them. I am due for another scan in October. Have they changed in size since they were discovered in 2018 as that seems to be what they watch for.
Hi jackdupThank you for the reply. They have been watching them since and they increased in size. From the last PET CT scan in April, they said it is showing that its cancer as the nodules have changed. My symptoms with recurring pleural effusions, have got worse since last year and made more worse when I caught Covid. I went for CT scan for staging 3 weeks ago. So waiting for results. On last appointment the doctor was talking about different treatments available. I'm praying everyday.
I’m sorry to hear that and will pray it is in the earlier stages where it is much more treatable. How long does it take to get the results? I can’t believe you have been waiting for results for 3 weeks. That just seems completely inappropriate to make you wait that long for results. Do you have an appointment to get the results or do you know when you will get the results. I wish you the best of luck and will pray that it is in the early stages. Please let us know when you get your results.
Hi,When I went for the test they said results will be with your doctor in 5 days but up to now I'm still waiting. The doctor said he will chase up with them to find out why they are taking long. He rang me to say the reason they gave was that they have a backlog. I have an appointment next week to discuss results and way forward. Hopefully the results will be available. I will keep you updated.
So sorry you have been left on tenterhooks I hope some of the very positive replies on this site have helped you. Everyone on this site will be thinking of you and wishing you well. Please keep us posted. xxx
Have you had a bronchoscopy? If not ask why not. That’s where they take cells from the lesions to test for any cancer cells. The lung cancer nurses are wonderful and don’t mind you calling them whenever you’re worried or have questions. Hope everything turns out well for you.
Hi,
I did not have any biopsy but the doctor was talking about starting chemotherapy/ immunotherapy thats when i asked about it. He said we will discuss about it on next appointment. I have appointment this coming week so will raise the issue again. I will call the nurses as advised. Thank you again. X
I do hope you get some positive answers. Bless you and thinking of you
Dear Pepido, I sympathise very much with your situation, particularly as I am myself similarly placed. The very fact of your numerous tests shows that they are treading very carefully on your behalf. I did not know until a friend told me that there are times when the affected points are something called pulmonary nodules, which are very different from cancer, apparently. I have been informed of a “hotspot” on a lung, and will hear tomorrow the results of the boffins’ deliberations.Good luck and God bless. Keep in touch x 😊
Hi,
Thank you for the reply. Yes I do have some of the pulmonary nodules but the 3 have been ruled out as just that coz of the changes. I have Systemic Lupus Erythematous which also causes pulmonary nodules but when I started having pleural effusions, chronic cough, chest pains etc and after CT scan for something else showed the nodules had grown, that's when they said they had to look into it and went through a lot of tests. Coz if it was just pulmonary nodules they would not have send me for staging I guess. They said its showing it hasn't spread to lymph nodes. I hope your results will be in your favour. Thanks for the info and take care. X
I also had a nodule on my lung, CT and Pet scans showed it was cancer. I was unable to have a biopsy due to the condition of my lungs. I was offered radiation therapy, and they were able to do what is called stereotactic radiation where they zoom in just on that nodule. The specialist said it was 90% as favourable as surgery. I’m about to have my 3 year scan, and so far so good, no change. Good luck to you.
Hi,
Thank you very much for the information. It is helpful. I am thinking its the same case as me cause my health is not good at the moment. I hope it goes in your favour. Take care. Xx
Hello Morningjoy,( what a nice name) I had exactly the same as you . I am on 3 monthly checks at the moment but hearing of your success, makes me feel good about the future. Stay well.
Good luck to you, Osha - hope it all goes well.
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